‘I only eat because I have to-to live’: The impacts of dysphagia
ABSTRACT
Background: Dysphagia (difficulty swallowing) is associated with a number of negative outcomes. Understanding the lived experiences of people with dysphagia is important to inform the provision of care.
Aims: To understand the experiences of people living with dysphagia and its impacts on their quality of life.
Methods & Procedures: We conducted semi-structured interviews with people living with dysphagia, across a range of aetiologies and ages. Reflexive thematic analysis was used to develop themes related to the impact of dysphagia on participants’ quality of life.
Outcomes & Results: Twenty-two people with dysphagia participated. Participants described multiple ways in which dysphagia impacted their lives. The analysis identified four themes that illustrate the lived experience of dysphagia: (1) Food is everything; (2) Eating is challenging; (3) Losses, adjustments and acceptance; (4) Managing dysphagia. These themes highlight the central role of food and eating in people’s lives and the profound impact that dysphagia can have on emotional wellbeing, social interaction and quality of life.
Conclusions & Implications: This study provides important insights into how dysphagia affects people’s lives. Understanding the lived experiences of people with dysphagia is essential to delivering person-centred, holistic and supportive care. Clinicians should recognize the broad impacts of dysphagia and explore people’s experiences as part of routine assessment and management.
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